This blog is dedicated to caring and caregiving. We are a forum for a broad spectrum of issues concerning physical and emotional health, aging, medical care, and spiritual well-being. Discussions are welcome for all topics that involve caring and caregiving.

Monday, December 29, 2008

This is my fourth post based on a policy paper of the Greater Detroit Area Health Council (GDAHC), entitled: "DESIRED CHARACTERISTICS OF A SYSTEM OF SERVICES FOR OLDER ADULTS." This following is a direct quote:

"The continuum of care should include support services, personal care services, basic and skilled nursing care services, and acute care services in a wide variety of service settings ranging from in-home to institutional environments…Acute medical care includes primary, secondary and tertiary medical care and alternatives to the biomedical models of care preferred by certain ethnic groups…Certain services should be available and accessible on a temporary or respite basis for caregivers and/or care receivers (e.g., housing, personal care, supervision, etc.)…Certain services should be available and accessible on an emergency basis (e.g., medical, housing, psychological, etc.)."

Friday, December 19, 2008

The following list was compiled by the Greater Detroit Area Health Council (GDAHC) for its policy paper entitled: "DESIRED CHARACTERISTICS OF A SYSTEM OF SERVICES FOR OLDER ADULTS."

These are services that a blue ribbon task force of experts on aging felt should be available in every community. Are they available in yours? Not every person will need every service, but every service will be needed by someone.

Saturday, November 29, 2008

Believe it or not, it's been 24 years since the Greater Detroit Area Health Council (GDAHC) released its "DESIRED CHARACTERISTICS OF A SYSTEM OF SERVICES FOR OLDER ADULTS." GDAHC is a major coalition of consumers, purchasers, insurers, providers, and other stakeholders concerned with health care quality and cost.

24 years and the content is still relevant—in fact, with our ever increasing numbers of older adults, it may be even more relevant today than it was then. One wonders whether in the intervening years any community has actually succeeded (or has even tried) to put together a comprehensive palette of services such as were advocated in July, 1984. If you know of one, please let me know.

What are these services, you ask? I'll tell you in my next series of posts. Perhaps this can lead to a serious discussion of the content of this important (but neglected) position paper—and maybe even to some belated action by key decision makers. Stay tuned.

Monday, November 24, 2008

To the right of this post you will see my Health Maven badge. Perhaps you are wondering what this means.

In these difficult economic times, it’s comforting to know there are medical and patient experts out there who care enough to answer health questions online for free. Dr. Geoff Rutledge, MD PhD, Wellsphere’s Chief Medical Information Officer, told reporters today about the new Health Maven Program, which connects volunteer doctors, psychologists, nurses, personal trainers, expert-patients and other experts with health seekers who are looking for answers. I am proud to be included in this special group. Anyone with access to the Internet can get their health questions and concerns answered quickly and at no cost at www.wellsphere.com/healthMaven.s.

Health mavens are carefully selected, knowledgeable, health experts who are committed to helping others live healthier, happier lives. Hundreds of Health Mavens have volunteered to join the program and answer questions, with new Mavens signing up every day. “We’re witnessing an incredible growth in the number of people using the Internet to find health information” said Wellsphere’s CEO Ron Gutman. According to an iCrossing research repot, for the first time in history people with health questions are more likely to turn to the Web for answers than to their doctor. “Recognizing this trend among our users, we assembled the world’s leading network of over 1,800 medical and patient experts to share their experiences and expertise with Wellsphere.com’s almost 3 million monthly visitors. We are humbled by the experience, expertise and genuine care these wonderful individuals share every day with people who come to Wellsphere looking for answers” said Gutman.

In addition to providing a wonderful service to people seeking answers to their health questions, the Health Maven program allows participating medical professionals and patient experts to broaden their impact by sharing their experiences and expertise with a much wider audience, and to get the recognition they deserve.

Friday, November 14, 2008

Not familiar with Pre-Need...or considering signing up for one? For a brief overview of Pre-Need, please read my archived post of July 18, 2008, with the title: IS “PRE-NEED” REALLY NEEDED?

As I point out in that article, there are times when such an arrangement can be useful. However, as I also point out, there are pitfalls to watch for. One of these pitfalls has to do with the financial strength of the funeral firm which is asking you for up front payment along with its contract.

Here's a pertinent quote from a Wall Street Journal article, "FBI INVESTIGATES FUNERAL CONTRACT COMPANY," published on November 12, 2008:

"The FBI is looking into alleged misconduct by a funeral contract company that guaranteed hundreds of millions of dollars of services to families before becoming insolvent…The FBI letter says the questionnaire is being mailed to funeral homes because it's impossible for agents to personally interview representatives from the "voluminous number of funeral homes" in the 19 states where the company had done business…In preneed funeral arrangements, customers pay for their funeral and burial services before their deaths. For example, a customer who bought a package of funeral services valued at $5,000 in 1995 would receive those same services upon his or her death in 2008, even if the value had risen to $8,500 with inflation. Under such arrangements, money for a prepaid funeral generally is placed in a trust account that bears interest."

Clearly, this will only work if the company remains in business. If it goes bankrupt before you or your family member needs the service, your money may be permanently lost. So the warning here is to make sure, to the best you are able, that the company wanting your business is likely to stay in business.

Admittedly, this is not always easy. But like all other transactions in the marketplace, the rule is Caveat Emptor: Let the buyer beware!

Monday, November 10, 2008

First, I wish to thank my loyal readers for their comments and support. Sadly, the response has just been too few and far between to justify the time and effort involved in posting all the chapters from my book, Dementia Diary, here on this blog. For those wishing to read more, there is good news. There is a page on my website (http://www.dementia-diary.com) that provides a free download of additional chapters. And, of course, anyone may still buy a complete copy for themselves or as a gift for someone they love that might benefit from reading it.

It was an interesting experiment but, from now on, I am returning to posting more traditional articles.

For starters, here's a listing of helpful links from my website. All have been tested and are useful to dementia caregivers everywhere. If any of them don't work by clicking, copy and paste the URL into the address section of your browser. Give them a try:

Thursday, November 6, 2008

For the past month I've been posting copyrighted excerpts of my book, Dementia Diary, on this blog. As I said weeks ago, I hope that getting a taste of the book in this way will prompt more people to buy it (and many have)—but, more importantly, I want people to read it. I wrote it primarily to help caregivers cope with their own situations and I've been gratified by the hundreds of wonderful email comments I've received since my memoir was published. However, only two reader comments have been posted so far for the book excerpts on this blog, leading me to wonder whether anyone is reading these excerpts, and if this is something I should continue. So here's a test of whether this is important to you. If you are reading and enjoying these excerpts, please post a comment and let me know. If I don't receive substantial feedback during the coming week that these excerpts have a following, I will discontinue posting them. Of course, the entire book will continue to be available for purchase from on-line retailers. I hope to hear from you.

Friday, October 24, 2008

Here is the fourth excerpt from my memoir, "Dementia Diary, A Caregiver's Journal." Hope you enjoy it and return soon for future installments.

DYING TO SHOP

When Minnie and Sidney Sweet retired to Florida around 1970, he was in his mid 60’s and she in her late 50’s. They were young retirees. Sid sold his small manufacturing business, and the building housing it, for just enough money to promise a comfortable, if not opulent, lifestyle. So they took the plunge. They left their only son. They left their daughter-in-law, and their three grandchildren. They left siblings, cousins and lifelong friends, and they bought a condo in a Florida retirement village.

You know the kind. Two bedrooms. Two bathrooms. A living room leading to a Florida room (porch, to you) that looked out at the seventh hole. A small kitchen (who cooks? It’s cheaper to eat out with the Early Bird)—and insufficient closet space.

The community boasted a full time resort atmosphere complete with clubhouse, swimming pools, tennis courts, golf course, transit system, and security gate. And, of course, shuffleboard. The ubiquitous shuffleboard. The Sweets never looked back!

The stock market decline of the 1970’s took the glow off the carefree nature of their relocation. It was a disappointment for Sidney, and one that attacked his self-image as a provider and protector of his family. Even though he had no personal control over what was happening to the economy, nothing could convince him that their troubles weren’t his fault. For Minnie, it was a shock to her sense of security. Her verbal expressions of these feelings did little to help Sidney overcome his guilt feelings.

Still, the Sweets had enough money left, when combined with Social Security and Medicare, to maintain a modest but adequate existence. So they survived. Actually, they thrived. In spite of the economy, they soared. The years flew by. They joined every charitable organization they could find. So did all the other newcomers.

The Sweets were warm and affable people. They provided a happy home for me as a youngster and, after I married, a loving embrace for the new family that I was creating. It was not surprising that they made many new friends in Florida. People liked and respected them. Sidney’s sense of humor and his integrity were widely admired, and he was a role model that many aspired to imitate. This was especially true for his son. Minnie’s enthusiastic and outgoing nature attracted people to her like bears to honey. They played golf, went to meetings, played golf, enjoyed social events, played golf, had doctor appointments (of which there were many), played golf and, of course, they shopped.

Shopping, for most of us, is about meeting our basic needs and desires for food, clothing, gadgets and luxury items. For some people, however, it has other satisfactions and it fills other needs. It may be a social event with emotional overtones—or a way to fill time in an otherwise boring life—or even, for some, an addiction that brings cheer to an otherwise dreary disposition. This can be as true for snowbirds and retirees of the Sunbelt as it is for the rest of the population—maybe even truer.

Consider a typical day in the life of the Sweets. In the morning they’d shop for, say, a toaster oven. They’d buy one, take it home and plug it in. They’d then enjoy a nice lunch with slices of toast made in their new purchase. But there’d be a problem. The bread might be browning less evenly than expected. Maybe it would even be getting a little too dark and crisp along the edges. They wanted a perfect piece of toast, something that the new oven seemed incapable of producing. Too bad! They’d have to bring the toaster back. They’d return it to the store for a refund and then, of course, would proceed to buy something else that would probably have to be returned the next day. And so it went. Day after day after day. And the Sweets were joined in these daily shopping adventures by thousands of their contemporaries. One wonders how the retailers managed to stay in business.

If this description seems amusing, consider the other side of the story. Shopping can provide a brief escape from the preoccupation with death and disease that is the constant companion of the seniors that populate these retirement communities. Their adult children “up north” may still believe in the illusion of their own immortality, but our shoppers know better. And yet, these older Americans somehow manage to mix a laugh or two with the bad things that happen daily to their neighbors, friends, and to themselves. It’s how they cope with their reality.

A case in point: While there isn’t anything happy in the tragedy about to be described, there is a bit of the ironic. Something that may elicit a smile or two even as it evokes the tears. Here’s what happened. One day in 1990, Minnie and Sidney Sweet decided to go to a nearby Sears & Roebuck store. It was early and the store just opened. They entered the store and, as they walked toward the escalators, Sidney died. That’s right, he died. On the spot. One minute he was walking alongside Minnie and the next he was laying face down where he had pitched forward onto the floor. With no sound, no cry of pain, nothing. His complexion was grey, and he was gone.

Later, a doctor was to say it was a massive heart event, that Sidney had felt no discomfort and never knew what happened. The doctor said it was a good way to die, easy on the deceased, but hard on his loved ones. It was indeed very hard on his son (and I should know), but it was hardest on Minnie. Imagine her horror. She had spent all of her married life almost totally dependent on her husband. She didn’t drive (more about that at another time), was rarely separated from him, and drew her emotional strength and most of her identity from him. It was not an uncommon role for women of her generation.

Also, her dementia had started. Not that anyone close to her, or she herself, recognized that her exaggerated personality quirks and her growing memory lapses were due to illness. They were just “Minnie,” and what could you do? Perhaps Sidney knew something was amiss. Perhaps not. But without him to “cover” for her behavioral idiosyncrasies, she would become more and more exposed.

In any event, Minnie never really expected to have to face life without Sidney. Oh, she knew that they were getting into the dangerous years, and they had even talked about it. But that was an abstraction, not something that could really happen. Until that morning at Sears, when it did. And what a way to have to face it. Alone among strangers, in a department store, sudden death. A catastrophe. She screamed and cried and couldn’t be consoled. She was seventy-seven.

Why, you ask, were they in a Sears store that morning? You guessed it. They were returning a small rug they had purchased the day before for the floor of their bathroom. It didn’t look as nice as they had anticipated. Twelve years after the event, at eighty-nine, Minnie would smile when asked whether Sid died before or after they returned the rug, and whether they were able to get their refund. She would chuckle at the thought, but could not recall the answer. A year later, at ninety, she would struggle to remember who Sidney was—and she would ask the visitor to tell her how her husband died.

End of Chapter

If you'd like to buy a copy of the book, it's easy. Just click the "Buy Now" badge on the right, or the link to my website just above my Wellsphere photo. And feel free to post your comments below.

Saturday, October 18, 2008

Here is the third excerpt from my memoir, "Dementia Diary, A Caregiver's Journal." Hope you enjoy it and return soon for future installments.

SOME ARE CALLED

One Sunday morning in December 1990, I was enjoying the quiet isolation of my business office while trying to clean up the loose ends of a hectic workweek. No one was around and I was sailing along, making great progress. I was feeling particularly happy. Business was booming. Several new contracts had been faxed in late Friday afternoon, accounts receivable were up to date, major projects were moving well toward completion, and I was beginning to think about heading home.

“Ring.” It was the phone. It didn’t actually ring but, instead, made that bone jarring electronic sound that has replaced the mechanical bell of older telephones (When did that triumph of 21st Century technology occur?). There is no word yet invented in the English language to adequately describe that sound. So…

“Ring,” will have to do.

It took me several moments to react. After all, who could be calling a business office on a Sunday morning? It must be a wrong number, I thought. I didn’t expect my wife, Nadine, to call. She knew that I preferred to work undisturbed on weekend office visits. I debated not answering it, but the so-called ring was persistent and, finally, as much from curiosity as anything else, I gave in.

“Hello?”

“Jerry?” It was Nadine’s voice.

I decided to be flippant. “You were expecting, maybe, Woody Allen?” I quipped, to let her know that I didn’t mind the interruption. “What’s up?”

The first sign of trouble was the silence at the other end. It was only a moment, but it was long enough to send me a signal. Whatever it was, Nadine was either reluctant to say, or else she did not know quite how to proceed.

“Jerry, I’m sorry to bother you. I know how much you…”

“It’s Okay, Nadine. I’m almost done for today. I was just wrapping up. I’ll be home in half an hour.”

“Oh,” and then silence for another interminable moment. Then, “Listen. It can wait. Just come home.”

All my antennae were up now. “Nadine,” I said. “I’ve got a minute. You called for a reason. So now I’m curious. What’s happening?”

“Really, Jerry, it can wait. If I knew you were getting ready to leave, I wouldn’t have called.”

Now I was getting alarmed or annoyed. I wasn’t really sure which. Probably both. There was something in Nadine’s voice that scared me.

“What’s with all the mystery?” I asked. “Don’t make me crazy. You called me, so what is it that couldn’t wait before; and, now, all of a sudden, it can?”

“Your Aunt Charlotte called.”

This was my mother Minnie’s younger sister, my favorite Aunt, and the closest thing I had to a sibling. She called frequently, but not usually on Sunday mornings. I didn’t know the details yet, but I was beginning to guess where this conversation was going. Hoping that I was jumping to false conclusions, I asked,

“Charlotte? What did she want? Is everything Okay in Florida?”

“She just called and asked me to contact you and ask you to come home.”

This was getting stranger and stranger. I was starting to understand how a district attorney must feel when cross-examining a hostile witness. My poor wife was clearly in distress. I was not yet completely conscious of the fact that what she had to say would hurt me, but my instincts were figuring it out fast.

“Nadine, come clean,” I begged. “Why did she ask you to do this?”

“She asked me not to tell you on the phone. She just said to get you to come home as soon as possible.”

So now I thought I knew why Nadine was calling. We had often discussed the relative issues associated with the loss of either of my parents in terms of who might go first. Minnie always seemed to be the more fragile of the two, so I was quite sure of the answer when I asked quietly, holding my breath.

“It’s my mother, isn’t it?”

“No.”

Oh, oh. That didn’t leave a lot of alternatives. Still, I asked, hoping for another negative, “My father?”

“Yes.”

Pause.

“Dead?” Please God, have her say “No.”

“Yes.”

The room began to spin. I said nothing. I couldn’t speak. I just sat there holding the receiver. From somewhere deep inside a tremor started and worked its way outward gathering momentum as it migrated. Soon it was forcing its way up through my chest and out through my throat. A huge sob broke forth surprising me with its power.

“Are you alright?” Nadine asked, her voice barely a whisper.

“No,” I replied. I wanted to say more but choked on my words. I just sat there and tried to fight the sobs, but it was impossible. They consumed me. Nadine sat patiently on the other end, saying nothing, waiting for my lead. Finally, when the spasm ended, I asked,

“How?”

She filled me in on what Charlotte had told her.

“Sears?” I repeated.

“Sears,” she said again.

“Returning a rug?” I repeated. I had heard her, but it was a comic twist to a personal tragedy, and very hard to absorb.

“Returning a rug,” she repeated, and both of us started to laugh. In between the tears, we laughed until it hurt. Feeling guilty about the levity, but unable to ignore the irony in the situation, I laughed until I cried. Then, emotionally spent, I said,

Another deep breath. It was hard for me to talk. “Call the airlines,” I managed to croak out.

“It’s done. We have a 9:05 am flight tomorrow. I’ve called the kids too. They’re all planning to go.”

I shook my head to try to clear it. “It’s all happening so fast. I can’t believe he’s dead.”

No response from Nadine for a moment. Then, “So, are you coming home now?”

I nodded, although there was no one that could see me. “I’ll be home in twenty minutes,” I said.

“Will you be okay?” she asked.

“I think so. Listen, did you really believe you could get me home without telling me the truth?”

“It seems pretty silly now,” Nadine replied. “Charlotte was insistent that I shouldn’t say anything on the phone, that I had to get you home one way or another first. It seemed like a good idea at the time.”

“Nice try!” I said. “See ya soon.”

End of Chapter

If you'd like to buy a copy of the book, it's easy. Just click the "Buy Now" badge on the right, or the link to my website just above my Wellsphere photo. And feel free to post your comments below.

Saturday, October 11, 2008

Here is the second excerpt from my memoir, "Dementia Diary, A Caregiver's Journal." Hope you enjoy it and return soon for future installments.

WHO IS MINNIE SWEET?

My name is Jerry Sweet and it is my sweet pleasure to be sharing this story with you. That’s right, Jerry Sweet—Sid and Minnie’s only child. I’ll be your tour guide for this entire tale. I assume, if you are reading this, that you are a caregiver or, if not, that you know someone who is. Either way, I think you will be able to relate these vignettes to your own experience and observations.

Throughout this narrative, I have tried to document the shifts in Minnie’s slipping cognition. My purpose has been to demonstrate, with anecdotes and description, the various stages in her disease as it developed from its subtle beginnings to the present time. Most of these pages track Minnie’s life after the age of seventy-seven when Sidney died and her cognitive deficits were exposed. However, for you to truly appreciate the extent of the damage to this previously vital and energetic woman, you need to meet her in her younger years. So let me introduce you to Minnie Sweet in happier days before her dementia came calling.

Minnie’s history was actually rather typical. In the early 20th century, millions of immigrants from Eastern Europe could tell a similar tale. She was born in 1913, in Vilna, Lithuania, one of the three children that beat the odds and survived. Besides Minnie, there was her older sister Beverly, and a brother, Henry. Four other siblings died before reaching their first birthdays. In spite of primitive pre-natal care, non-existent well-baby care, poverty, malnutrition, and the daily violence that permeated her world, Minnie decided to live. It was an early example of a biological hardiness that was to serve her well in the years ahead.

When Minnie was two years old, economic decline and anti-Semitic harassment in Eastern Europe were growing more serious day by day. Minnie’s parents (and my grandparents), Morris and Rebecca Goldberg, decided to escape these dangers and to come to America. They arrived at Ellis Island in 1915, terrified about the possibility of being sent back by the United States authorities. Minnie had rickets, a nutritional disease prevalent at the time among the children of the immigrant poor. A deficiency of vitamin D and/or calcium was the cause, and it was easily corrected if caught in time. However, it affected bone growth and it was not uncommon for would-be Americans to be shipped back for this, or for even less serious health issues.

Luck was with the Goldberg’s, however. They passed through the inspection easily, breathed a big sigh of relief, and settled in the Brownsville-East New York section of Brooklyn. Other relatives also immigrated to this location, and it was fast becoming a cultural center for thousands of Jewish refugees that shared the Goldberg’s history, concerns, beliefs and ethnic background. Life was economically poor, but socially rich. Morris worked in the needle trades and Rebecca stayed home to have one more child, a girl named Charlotte, and to maintain a home for her family. Surrounded by siblings, cousins, aunts, uncles, and other family and friends, Minnie thrived. She became a real American girl. Soon the flapper years were happening, and the Great Depression was still in the future.

Attending college, or even completing high school, was a stretch for most new Americans, especially girls, back then (although Minnie did feel much pride when, decades later, she earned a GED high school equivalency diploma). Rather, it was expected that young people would work to help support the family. And Minnie did. She became a cosmetologist and manicurist, and went to work for Mme. Sweet’s Beauty Salon. It wasn’t long before the boss’s son, Sidney Sweet, noticed her—much to his mother’s dismay. Notwithstanding her objection to Sidney’s fraternizing with the help, a romance blossomed that culminated in a marriage in 1933.

In spite of the Depression, Minnie and Sidney pursued the American dream and became a happy, optimistic couple. They were embraced lovingly by one and all—except by Mme. Sweet, who did everything she could to undermine the relationship. She eventually accepted the inevitable, but not before enabling a lifelong bitterness in her daughter-in-law, who never quite forgave her.

In those days, the sport of boxing was a pathway out of poverty for many immigrant young men, and fighters such as Jack Dempsey and Barney Ross were their role models. Dreaming of money and fame, Sidney Sweet decided to try his hand at prize fighting, but he soon had second thoughts when his nose was broken in the ring.

In 1937, I came along and that changed everything. As a new dad, Sidney now needed to make a steady living. So he took his squashed nose out of the ring and joined the electrician’s union. Minnie became a full time mom lavishing love and attention on her only child. In 1946, Sidney traded his blue-collar shirts for an entrepreneur’s portfolio. He gave up being a master electrician in order to open a small factory for the manufacture of leather novelties.

When I was nine years old, Minnie felt free to begin her new career as the well-organized and capable foreman of the family’s budding manufacturing business—and she was terrific. She was the chief operating officer of the business, the human resources department, the bookkeeper, and the detail person, while Sidney concentrated on product development, sales, and production policy. They were a great team.

So Minnie and Sidney settled into a life surrounded by warm and stable family relationships and friendships, and they began to experience some of the economic success of post-war America. They moved their home multiple times in the 1940’s, 1950’s and 1960’s, each time into a “better” Brooklyn neighborhood. America was being good to these refugees from European poverty and hate, and their patriotic feelings were very strong.

As the economy of the late 1960’s overheated, it ultimately reached the working and lower middle classes. It seemed to the Sweets that everyone they knew had great investments and a winter home in Florida, and they wanted onto this bandwagon. Minnie and Sidney began “snowbirding” to Southeastern Florida in the late 1960’s to see if they might like it. It didn’t take long for them to become property owners and permanent residents in this fast developing region.

Now Minnie really came into her own. She began to apply her considerable organizational skills to various non-profit leadership activities in New York and in Florida. She discovered a love and a talent for communal affairs and accepted one assignment after another. Matron of the Eastern Star; founder and president of at least three Hadassah chapters; member of the town’s library board and its Director of Volunteers; leadership roles in B’nai Brith Women and Jewish War Veterans—and these are just for starters. It was these organizations that supplied the deep and lasting friendships that blessed Minnie and Sidney for the several decades of their lives in Florida.

Of course, the idyll I’ve been describing had to end. Even as Minnie multi-tasked and spread her social wings across Southeastern Florida, something was changing in her brain and personality. That something was mistakenly assumed by those closest to her to be excessive stubbornness and selfishness. We were right in what we observed, but wrong about the cause.

In 1990, Sidney died and Minnie’s descent down the “slippery slope” of multi-infarct dementia accelerated. Today, in 2005, she has not yet reached the base of this slope, but she is certainly nearing the end of her journey. At first, when she was beginning her slide, none of her loved ones, including me (especially me), understood that her sometimes difficult and abrasive behavior was part of a progressive disease process. Today, her illness is obvious. Looking back, milestones in her decline can be identified. The various chapters of this book are intended to give life to the circumstances surrounding these turning points.

At each of her transitions, whenever Minnie reached a new low in functioning, I thought that she could not decline further and still remain “alive.” Each time, it was like a mini-death. Each time, I grieved anew. Often, just when I had finally made my peace with her new level, she would rally and seem to regain ground that she had lost. When this occurred, I usually allowed myself to be duped into believing that she was not as bad as I had feared. Each time, though, something soon happened to highlight Minnie’s new deficits. Whenever I thought that she could not possibly lose additional cognition and continue to function as a viable human being, it turned out that she had not yet reached bottom. It seems that there is no conclusion to the deterioration process, other than the grave.

As I write this, Minnie is getting ready to experience her ninety-second birthday. No one close to her ever expected her to live so long. That she did so is both a blessing and a curse. For her more than for me. Dramatic changes took place in her in the years since Sidney died, changes that became more noticeable and more frequent over time. She gradually became mild and amiable, non-confrontational, and unlike the agitated Minnie that emerged from mourning her husband’s death.

Observing these changes in the early stages of her dementia, I was forced to marvel: is this the mother who made me crazy all those years when her emotions were out of control? Or is this gentle and loving paragon of a happy old age the true, underlying person? Did the psychotropic drugs she took mask her authentic nature or, conversely, did these medications permit the real, kind, and thoughtful Minnie to shine through at last? To what extent is personality only chemistry? Who is the real Minnie Sweet?

In 1997, Minnie moved up north to be near family. Thankfully, she is still among us. Of course, no one knows know how much time she has left and, as she said long ago, she has “longevity.” Every day that goes by, however, sees further diminution in her capabilities. When she first came to live near me, I visited several times a week for an hour or so and, whenever possible, took her out of the institutional environment. Later, when I could no longer take her on outings, she could still reminisce, share memories, look at family photos, sit outside in nice weather, and maintain a reasonable conversation.

Even the telephone was a useful medium for staying in touch. Today, our phone conversations are no more, and my visits have become less frequent and shorter. She is thrilled when she sees me and, remarkably, still knows who I am. Occasionally, she will respond to my questions with one-word answers. More frequently, she says nothing. If I stop talking, we sit in silence.

Yet, until recently, Minnie kept radiating love and happiness. She sometimes still does, although less often these days. Does her life have quality? Who can say? Before she came up north, I would have argued that no one in her current condition could enjoy life. I would have said that I’d never want to live in such circumstances. Today, I’m not so sure. Every moment of every day is new to Minnie Sweet. She still smiles a lot. And she still blows kisses to everyone.

Quality of life? What is that? Whatever it is, for most of her time here, I think Minnie had it.

End of Chapter

If you'd like to buy a copy of the book, it's easy. Just click the "Buy Now" badge on the right, or the link to my website just above my Wellsphere photo. And feel free to post your comments below.

Tuesday, October 7, 2008

As promised, here is the first free excerpt from my memoir, "Dementia Diary, A Caregiver's Journal." Hope you enjoy it and return for the next installment.

Next week, watch for the first Chapter: Who Is Minnie Sweet?"

"PREFACE

This is neither a guidebook nor compendium of advice about how to cope with caring for an aging parent or spouse with dementia. There are literally hundreds of such tomes available. My hope, instead, is that this book will become a kind of "portable support group" for caregivers.

Dementia Diary is first and foremost a memoir about what it’s like to be the only child, a son, and the caregiver of a widowed and cognitively impaired mother who lives alone half a continent away.

Those who know my family will recognize that the name I’ve given my mother in this book, Minnie Sweet, is not her real name. Why did I change her name? I have two reasons.

First, even though the narrative is largely autobiographical, some facts have been fictionalized for effect. Second, and more important, writing this memoir has been one of the most emotionally difficult projects I have ever undertaken.

In order for me to attempt it with even a semblance of objectivity, I required an artifact. Using fabricated names was that artifact—it was a distancing technique that enabled me to approach this powerful topic with safety, compassion and humor. So all of the names in this memoir are fictitious, including my parent’s and mine. This worked for me and I hope it works for you.

It is also possible that someone with one of the names I used may read this book. If so, please understand the happenstance involved, and accept my apologies. Any resemblance to any real persons living or dead is purely coincidental.

I also intend for the institutions that served my mother to remain anonymous. She was fortunate to have found her way to some wonderful facilities and programs that, I believe, extended her years and the quality of her life. However, for consistency with the “semi-fictional” nature of this memoir, these institutions are best left unidentified, and any resemblance to actual facilities and programs is purely coincidental.

A word about Mom’s long, slow descent into the opaque fog of multi-infarct dementia: This is a different syndrome than the well-known dementia called Alzheimer’s disease, and it can be caused by frequent “silent” mini-strokes.

Here is the way a physician described the condition to me: the “victim” of such events may not be, indeed usually is not, aware that anything out of the ordinary has occurred. Neither are his or her significant others.

Perhaps there is momentary weakness, headache, or dizziness, but nothing major. Over time, however, enough damage is done to the brain that symptoms begin to appear. While some of these manifestations are unique to this syndrome, all dementias have certain behavioral commonalities that will be recognized in these pages.

I address this book to readers who are actively involved in care giving for loved ones with dementia, to those who have had this responsibility in the past, and to those who expect to face it in the future. Perhaps you will find a nugget here and there with which to identify, and from which to draw some comfort and support.

I also address this book to professionals charged with the care of persons with dementia. Perhaps it will provide a bit of insight into the perspective of a family member attempting to understand and deal with a loved one’s loss of identity, memory, and cognition.

The inspiration for this diary was a talk that I was invited to give to a conference of caregivers sponsored by an adult day care program for people with dementia. The agenda included speeches by a psychiatrist and a geriatrician, followed by a panel of four caregivers reporting on their own experiences.

The purpose was to educate, inform and support an audience of caregivers who were struggling, largely in isolation, with all sorts of issues, and to provide an opportunity for them to share experiences and to ask questions.

At first, I didn’t want to make this presentation. I thought it would be an improper invasion of my mother’s privacy to talk about her in a public forum. Besides, it was an emotionally powerful subject and, even though I had done a lot of public speaking, I wasn’t sure I could handle this one in a calm and professional manner.

But the program sponsors prevailed. All of the other panel participants were women, they told me. They said that the program needed a man who was willing to share his experience as a caregiver, as well as his feelings. Men don’t easily do this kind of thing, they said, so “please,” they pleaded, and finally wore down my resistance. They pointed out that lots of men are caregivers and that these listeners would appreciate hearing a presentation by a man about this sensitive subject.

In retrospect, they were right. The male caregivers in the audience, and there were many, directed most of their questions to me, and quite a few approached me afterwards to thank me. They suggested that a book describing my experience as a male caregiver is urgently needed in the marketplace. Existing books, they said, do not address their feelings and unique responsibilities as sons and husbands.

I also asked many of the women present if such a book would find a readership among female caregivers. Interestingly, they thought it would—that women, too, would benefit from reading a man’s point of view on the care giving experience.

I learned a lot that evening. The presentations and audience questions taught me that the kinds of bittersweet anecdotes described in Dementia Diary are the common lot of all who deal with the reality of dementia in a loved one.

This is a disease that knows no boundaries. It is blind to the categories in which we usually place our fellow human beings. It can occur at the age of 55 or 85. It can happen to Blacks, Whites, Hispanics, Asians, Jews, Christians, Muslims, males and females, rich and poor. It has not spared ex-presidents.

Tears are shed by husbands and wives, sons and daughters, brothers and sisters—in fact anyone responsible for the care of a loved one with dementia. I hope that this book will help all such wonderworkers to understand that they are not alone. My mother would want it that way.

In the pages that follow, her story has been deliberately paced to mimic the unhurried rhythm of her gradual slide into cognitive disability, barely perceptible on a day-to-day basis, but dramatic and frightening when viewed through my own retrospectoscope over the long term.

Some chapters, especially the early ones in the book, may not reveal Mom’s (Minnie Sweet’s) growing deficits to the reader. Some of the anecdotes may seem like the normal foibles of an aging woman rather than a person with a serious dementia. That’s what I thought too.

It’s only when we get to the later stages (or later chapters) that we can see, with hindsight and in the light of her full-blown memory impairment, that the signs and symptoms were there from the beginning.

Keep in mind, also, that the young Minnie Sweet would have been mortified by many of the attitudes and behaviors of the elderly Minnie Sweet. We would have had to explain to her, just as we ourselves had to learn, that the latter was part of the disease process, and not her true personality and character.

Finally, it is my wish that the reader will see beyond the sadness, tragedy and, yes, comedy sometimes associated with the evening hours of life, and will recognize that dementia, while terrible, does not diminish the essential humanity of the afflicted individual."

Again, next week, watch for the first Chapter: Who Is Minnie Sweet?"

If you'd like to buy a copy of the book, it's easy. Just click the "Buy Now" badge on the right, or the link to my website just above my Wellsphere badge. And feel free to post your comments below.

Monday, October 6, 2008

Starting with this post, I plan to publish my entire book, "Dementia Diary, A Caregiver's Journal" chapter by chapter on this blog. You may ask, "Why are you doing this? Don't you want people to buy it?"

The answer is, "Yes," I do want people to buy it, and many have—but, more importantly, I want people to read it. I wrote it primarily to help caregivers cope with their own situations and I've been gratified by the hundreds of wonderful comments I've received since my memoir was published.

No, there's no catch. If you have the patience you can read the entire book right here in future posts. My mother would be thrilled to know that her illness has brought comfort and peace to others caught in the web of dementia as sufferers or caregivers. And both she and I would hate to think that the price of the book would ever keep anyone from reading it.

So bookmark this blog and check back at least weekly. Of course, If you enjoy these posted chapters and can't wait the months it will take to see the entire book on this blog, then please feel free to go to my website or Amazon's or Lulu or to any of your favorite on-line booksellers to buy your very own copy. Or to buy one as a gift for someone who needs it.

But whether you do this or not, look for the first post, the Preface, in the next day of so.

I hope my memoir will give you the same level of peace and acceptance that many other caregivers have experienced. And, maybe, even enjoy a chuckle or two at the familiar anecdotes described.

Monday, September 15, 2008

To the right of this post you will see my photo in a graphic by Wellsphere calling me a Top Health Blogger. But what does this mean and who is Wellsphere? For a detailed answer I recommend that you check out their website at Wellsphere.com.

In the meantime, here is an edited quote from that website describing Wellsphere's mission:

"Wellsphere’s mission is to help millions of people live healthier, happier lives by connecting them with the knowledge, people and tools they need to manage and improve their health.

"Recognizing that each person has their own unique health questions, Wellsphere developed a model...to help people address their individual concerns. Wellsphere...enables users to quickly and efficiently find comprehensive, personal answers and support for their specific health needs...Wellsphere.com is one of the leading consumer health websites in the world.

"One of the keys to Wellsphere’s success is the breadth of knowledge across its network of experts and experienced health writers, and within its caring community. Wellsphere’s network of writers and bloggers includes more than 1,200 of the leading medical minds from Stanford, Harvard, Johns Hopkins, Yale and other top Medical Schools, as well as patients facing difficult diseases who bravely share their stories of survival."

I am honored to have been invited to be part of this network of writers and hope that you will find the content of Wellsphere's site to be helpful in your search for meaningful information about your health issues.

Wednesday, September 10, 2008

I knew I had made a serious mistake in hiring this particular Geriatric Care Manager. Suddenly, it seemed as though I was paying an hourly fee for the time she spent having lunches with Mom—plus she expected me to pay the cost of these lunches which were listed as “Related Expenses” on her bills.

She was also billing for chauffer services, and for waiting around in doctors’ offices (which could sometimes be several hours of waiting time times her hourly rate). I thought I had hired a GCM. Instead, I appeared to have “bought” a new best friend for my Mom (who had managed to alienate all of her “free” friends).

What was going on here, I wondered? I had hoped for an objective ally to help me plan for Mom’s needs but, suddenly, (according to the GCM) Mom had "hostile feelings that needed expressing." So I found myself dealing with two adversarial camps: Mom and the GCM versus me.

It was time to evaluate the situation. The GCM concept still made sense to me, but perhaps I had selected the wrong person. She was adding to my stress, rather than relieving it…not at all what I had in mind by hiring her. But was she helping Mom? So I asked Mom how she'd feel if I fired this GCM and, surprise…surprise, she was actually happy to see the lady go.

Shortly thereafter, I found a real geriatric professional, one of the social workers at a local family service, who made it a priority to evaluate Mom’s needs, who conducted herself professionally, and who reported regularly to me. I'll call her Gloria, although that was not her real name.

She was a breath of fresh air—everything I had hoped for in hiring her predecessor (that I didn’t get). She soon discovered that Mom had known all along that the other lady was charging us a fee. So she knew the lady was not a "real" friend, just a hired gun. Rather than confront me with this news, however, my mother deliberately ran up the clock as her way of killing the arrangement. At least, that’s what she told Gloria.

It didn’t take long for Gloria to figure out that Mom had some real emotional and cognitive problems, that she was probably at the beginning stage of some sort of dementia, and that the symptoms were certain to get worse.

She began to prepare me for a day, in the not too distant future, when my mother would need to move again, this time into a more sheltered environment.

Wednesday, September 3, 2008

She charged $25 an hour for her Geriatric Care Management service and, at first, I was happy to pay it. The woman came highly recommended, was a member of the GCM professional association, and she lived near Mom. She sounded personable and intelligent on the phone. What more could I ask?

Surprisingly, Mom continued to sound receptive to such assistance, and so I set up her first appointment. The GCM did an initial assessment interview and provided a written report that recommended engaging her for ongoing guidance and assistance. She felt that Mom needed someone nearby to confide in and to analyze why she alienated others. She also said that Mom had definite symptoms of early dementia.

Sounded wonderful. The last item, communication, was from my point of view the most important single benefit of the service I thought I was buying. And for the first month or so, the GCM did stay in touch, maybe not weekly, but often enough so that I had a sense of what was happening with Mom.

Gradually, though, the services provided by the GCM began to change. To find out how, stay tuned for the next post.

Tuesday, August 26, 2008

So I was stuck in Michigan while my mother continued her cognitive slide in Florida. What to do?

I had a plan to help me stay better informed about her daily needs, but it would require her willing cooperation. A new profession had recently emerged to help relatives of elderly family members supervise and coordinate care and services for their loved ones. Its practitioners were known as Geriatric Care Managers (GCM) and I wanted to hire one for Mom. But how to find a good one?

A national association of these GCM’s had formed for the purpose of promoting professionalism among its membership. It provided contact information for those of their members that practiced in South Florida. With the membership list in hand I phone interviewed several GCM’s living and practicing near Mom, and selected one. But would my mother buy into this idea? I had my doubts.

There were all sorts of services that these professionals said they could provide, depending upon their individual backgrounds and training. These included, among other things, clinical services, transportation, shopping assistance, emotional support, financial management, liaison with social services, or just plain old companionship.

Perhaps the most attractive feature of this service was the potential of having an objective, third party, on the scene, able to monitor the situation and to report regularly to me about Minnie’s needs.

It was like buying a surrogate caregiving relative, I thought...someone to be there for Mom when I could not. Without question, there would be some tough choices to be made down the road, some of which might be heart wrenching and guilt producing—like the possibility of having to arrange for the dreaded nursing home, for example.

I didn’t want to face such decisions alone, always to wonder whether I had done the right thing. Here was a way, I thought, to have a partner to assist me to evaluate each situation, and to advise me on the best professional options for my mother. It was the perfect setting, I thought, for a Geriatric Care Manager. So I hired one.

Soon I was paying big bucks for this GCM to have lunch several times a week with Mom…and not much else! More next time.

Thursday, August 21, 2008

Here's a situation that I bet affects many of my readers and that causes some of you much frustration and angst.

In the beginning of Mom's decline, it was not immediately clear to me that she was losing cognitive function. More and more, after Dad died, she naturally looked to me for help with her decision-making and with her growing problems with daily living.

I had to decide things like: when to intervene forcefully about driving, housing, medical care, etc., and how to make this determination long distance. For me, living half a continent away, this is what it meant: when to hop on a plane, leave my own business and family concerns, and go to her—-and when not to go. It wasn't always easy to determine when my presence was absolutely necessary. As with most of us, there were limited opportunities for me to actually pick up at a moment's notice and go.

So you know what happened, don't you? Often, when I finally arrived to deal with her crisis, the problem remarkably got resolved while I was in transit and my physical presence turned out not to be really necessary. On the other hand, shortly after I returned home, she'd invariably face an issue that really did require me to be there…only, this time, I would not be able to get away again.

I wanted to save my trips for the absolutely essential ones, but how could I know in advance? How indeed? There was nobody but me, her only child and next of kin. Who could advise me? I needed partners to assist me.

In a future post I'll share the good news and the bad that resulted from my search for a local assistant.

Wednesday, August 13, 2008

I'm often asked about examples of challenging behaviors that I noticed in my mother—behaviors that helped me to finally realize she was sinking into dementia. The list below may help you to evaluate what is happening to your loved one.

For Mom, it started slowly with just a few of these behaviors attracting my attention. I just passed them off to normal aging. Gradually, it reached the tipping point where I could no longer ignore what was happening. There was an emergency a day.

I lived 1500 miles North of Mom, trying to run a business. Every day in the middle of some crisis at work came a phone call about some calamity in Florida. Sometimes from Mom, sometimes about Mom.

Up to 30% of my time was being consumed as a long distance caregiver and decision maker—often without the facts I needed to make correct, emotion free, objective decisions. Frequent air travel to check things out became another costly requirement. Here’s some of what I had to deal with:

• NUTRITION: She was not eating well. Things in her refrigerator were scary: ie: partly eaten fruits and cheeses with lots of mold.• CLEANLINESS: Her house was dirty (she had been a meticulous housekeeper).• HOUSEHOLD ORGANIZATION: There was clutter everywhere. This was not my mother!• FIRE SAFETY: She was storing plastic bags in the oven. Then, forgetting, she was turning the oven on.• REALITY ISSUES: Hallucinations about mice were occurring with increasing frequency.• HEALTH ISSUES: Many health issues were threatening her well-being. Hospitalizations for pneumonia, arthritis, etc., were becoming more frequent.• DRUG COMPLIANCE: She was non-compliant with medications with the result that her blood pressure was out of control and other health conditions were not receiving prescribed therapy.• MEDICAL CARE: She changed doctors (and HMO's) several times each year. Continuity of care suffered and I could not build a useful relationship with her physicians.• INTERPERSONAL RELATIONSHIPS: She was isolating herself—alienating friends and family with harsh, judgmental personality changes.• FALLING: She fell in her room, sustained a serious head injury and no one found her for 2 days• FINANCIAL MANAGEMENT: She was messing up her finances and making other poor judgments.• HOUSING: She became a housing hopper: In a 2 year period she went from her Florida house to a Florida condo to a furnished condo in Michigan back to her Florida condo to senior apartment to assisted living in Florida back to assisted living in Michigan. She had trouble settling in anywhere.• DRIVING: Her driving became a daily nightmare with multiple fender benders and traffic violations.

Sound familiar? Are any or all of these things happening to your mom, dad, spouse or significant other? I hope not, but if they are, it may be time to seek a professional geriatric evaluation.

Tuesday, August 5, 2008

• When did I first realize that my mother was ill and not just being difficult?• What are some examples of her challenging behavior?• How did I try to cope?

For this post, I will focus on the first question: when did I finally understand that what I was seeing was illness and not nastiness? While I cannot pinpoint the exact moment with any accuracy, suddenly I knew—the light bulb flashed on and it was not a happy moment.

All her life, Mom had been a well organized, high energy person. She ran my father's manufacturing business and, when she retired, she became a dedicated community oriented leader, an organizational volunteer and chapter president, a local library board member, and a worker for all sorts of charitable organizations too numerous to mention here.

My mother grew up in Brooklyn, New York, and lived there until retiring to Florida at around age 60 with my father. Dad died suddenly while shopping in a Sears store. He just collapsed with Mom shopping beside him. He was 83. Mom was 77 and, of course, was totally traumatized.

I was to learn that dementia is something that happens gradually; quietly altering a person's skills and behavior until it becomes so obvious something is wrong that it can't be ignored. After my father died, I suddenly realized that Mom had been slipping emotionally and cognitively for some time. I just hadn't noticed before because Dad had been covering for her.

Mom's behavior was becoming eccentric and embarrassing. At first, not suspecting illness, I felt angry and guilty but, as I say, dementia kind of creeps up on you. I gradually realized that something was wrong. Something very serious.

She was ultimately diagnosed with a progressive dementia, not Alzheimer's, rather a multi-infarct (mini-stroke) vascular dementia. And her only son (me), who lived 1400 miles away, was to become her primary caregiver.

Next time, I'll report on question two: Examples of Mom's behavior alerting me to the fact that something dreadful was happening.

Wednesday, July 30, 2008

Or is it one of the many other kinds of dementia that slowly rob our loved ones of their identities? It matters not which dementia they have. The effect is pretty much the same.

So I finally “got it.” Maybe you have too. But, if not, consider this: Chances are your loved one would be embarrassed to death if his earlier, healthy, self could see him now.

It’s up to us as caregivers to recognize that Mom or Dad (or spouse) are not being difficult on purpose, and to forgive them—daily if necessary. They just can’t help themselves.

DEMENTIA CAREGIVERS OFTEN FEEL ISOLATED

They need lots of caregiver support. For a very long time, I felt TOTALLY ISOLATED—like I was the only one in the whole world carrying the burden of caring for an aging parent. I bet you sometimes do too.

Be good to yourself. Seek dementia support services wherever and whenever you can.

That’s what I did and gradually I realized that I WAS NOT ALONE! Thousands of people were experiencing exactly what I was—dealing with memory loss and unpleasant behavior in a loved one, every moment of every day.

Tuesday, July 29, 2008

I couldn’t tell. I was too close to it. I got mad every time she lashed out at me…or else I felt embarrassed whenever her target was someone else (usually in public places)—or when she over-ate without remembering that she had just eaten—or when she asked the same question over and over and over—or she was physically aggressive—or (you can fill in the blanks with other things that make you crazy).

Every time Mom did something socially unacceptable (I won’t catalogue these things—you know what they are), my anger raged. Afterwards, of course, I felt guilty for getting angry. Well, I didn’t have to feel this way…and neither do you.

Here’s what the social worker told me:

“DEMENTIA IS A DISEASE PROCESS”

“Cool it buddy!” she said. “It’s not about you. It’s about her. It’s a disease process—an illness.” So recognize the wisdom of the social worker’s advice.

Learn to ignore the bizarre behaviors of your loved one and to accept them as “normal” symptoms of dementia disease (and to not take them personally even when they seem to be personal). You’ll be a much happier person and a much better caregiver.

Remember: Your Mom can’t control her dementia symptoms any more than if it were pneumonia, or heart disease, or cancer. Things are happening in her brain that make her do the things that upset you.

Friday, July 18, 2008

There is a product that is growing in popularity among seniors and is being merchandised aggressively by funeral parlors. This product is known euphemistically as “Pre-Need.” It is sold by funeral directors, of which there are very many. Retirement communities breed undertakers and cemeteries in the same way that young family suburbs grow childcare centers and elementary schools.

Morticians have discovered an undeniable truth about merchandising their wares. It is very difficult to return a cemetery plot or coffin, especially after it has been used. This gives the death business an advantage that has to be the envy of merchants selling more mundane wares.

So what, exactly, is Pre-Need? The idea, which is attractive to many retirees, is that they can make decisions concerning their deaths while still alive and vigorous. Purchasers of Pre-Need packages hope that all will go smoothly when they die, and that they will be sparing their loved ones the turmoil and trauma of having to make all sorts of tough choices under time and emotional pressures.

By arranging all of these things, and paying for them in advance, the theory goes, the temptation to buy the most expensive casket and services (because nothing is too good for “Dad”) can be avoided.

The cynical view is that Pre-Need is a clever scheme that greedy funeral parlor owners have invented to lock in their customers, and to obtain up-front capital on which to earn interest. They can sell the “product,” usually on an installment contract basis, with high, if not usurious, interest rates.

The buyer thus loses the investment interest that would have been earned by the dollars spent on the Pre-Need contract. It is the mortician that now earns the investment interest—and, to make the deal even sweeter, the buyer gets to pay credit interest to the mortician for the privilege of deferring final payment.

Not bad (for the funeral parlor, that is)!

In addition, the mortician is assured that the mortuary’s investment for cemetery land is quickly returned to the business, along with a nice margin of profit, long before it’s actually needed for the purpose for which its sold. No wonder so many entrepreneurs are dying to get into this business.

The truth is that Pre-Need can be a win-win in many situations. If the funeral parlor and cemetery deliver what is promised in the contract; if they don’t use the moments after death to impose the old “bait and switch” technique on guilt ridden survivors in an effort to sell higher priced product than chosen by the deceased; and if the terms of a fair and honorable agreement reached with the deceased long before the moment of need are observed, then the Pre-Need agreement may actually provide a bona fide value to the purchaser and to his or her loved ones; and a reasonable and fair business profit to the seller as well.

Monday, July 14, 2008

Just a few tips for the alert caregiver to consider when observing memory loss in a loved one:

* Be alert - document signs of memory loss and circumstances

* Notice if the memory loss is affecting activities of daily living such as planning, organizing and making decisions about every day functions.

* If there is a memory decline/loss be sure to be evaluated by physician

* Keep record of all medications including prescriptions, over the counter, herbs, and vitamins

* Understand the difference between delirium and dementia

* Learn to identify and manage stressful situations

These tips were provided by Jean Bandos, MSN, RN, GCNS-BC Research Director at "My Health Care Manager," a national company that helps seniors and their families manage the complexities of older adult life.

Sunday, July 13, 2008

So what actually causes memory loss or cognitive decline? The answer is complicated. Some things we know about. Others are speculative. Our scientists are making continuous progress in identifying potential causes, but lots more research remains to be done.

In the meantime, here are some of the more recognized ones as compiled by Jean Bandos, MSN, RN, GCNS-BC Research Director at "My Health Care Manager," a national company that helps seniors and their families manage the complexities of older adult life.

*Medication with polypharmacy and drug interactions- if an older adult is on multiple medications and is experiencing memory issues, they should have a pharmacist or physician assess each medication.

Saturday, July 12, 2008

Some months ago, after years of slow, agonizing decline into the opaque fog of dementia, my mother died. Mercifully, she slipped away gently one evening and was buried shortly afterward next to my Dad who had been waiting patiently for their reunion for 16 years.

Oddly, Mom died the evening before Thanksgiving, while Dad passed a day before Christmas eve. His birthday was November 28th and we always celebrated it on Thanksgiving. The Thanksgiving through New Years Holiday Season will always be bittersweet from now on.

Having been through so many mini-deaths during Mom’s long decline into dementia, I sort of expected the actual event to be easier than it was when Dad suddenly died of a massive coronary event in a Florida Sears store. It wasn’t. It was like being hit in the head by a 2x4. A clergyman told me, wisely, that whenever a mother dies it’s the wrong time. You’re never ready. He was so right!

When I got “the call” I’d been expecting for years (each time one of her medium sized mini-strokes knocked her down to a new low), I was stunned. Strange how poorly human beings are able to deal with the reality and finality of death. This wasn’t just another false alarm. This was it!

Still, as they say, for Mom it was a blessing (and probably for me too, although I don’t feel that way yet). Her life quality was so low for so long that I can only believe in the goodness of her being out of pain, discomfort, total dependence, confusion, etc. For me, though, I’m still at the stage of realizing that I’ll never see her again—and that I’ve become an orphan...an adult orphan.

Humor is often the best way to deal with sadness. So, a friend told me that as an only child, caregiving Mom for 16 years was my job. Not only have I lost my mother, he said, but I’ve also lost my job.

Friday, July 11, 2008

It's not always easy to tell when a loved one is experiencing the onset of dementia. Here are some significant signs that are provided below as a courtesy from their author, Jean Bandos, MSN, RN, GCNS-BC Research Director at "My Health Care Manager," a national company that helps seniors and their families manage the complexities of older adult life.

*Forgetfulness - not just forgetting names or appointments, but frequently forgetting doctor’s appointments, important anniversaries, birthdays and other special dates that would have never been forgotten in the past.

*Forgetting to the point that it causes confusion and interruption with daily activities.

*Forgetting to turn off the stove – we have all left a burner on accidentally, but if this is a frequent event or if the older adult does not remember cooking at all, then it is no longer a “normal” part of aging.

*Everyone experiences difficulties finding the right words, especially in stressful situations. It’s a bigger issue when an older adult cannot remember simple words and substitutes his or her own words making it difficult to follow what they are saying.

*Misplacing items is common for everybody, but it becomes a “memory problem” if the keys are found in the freezer or the ice tray is in the dryer.

*Finances – there is a problem if a senior has always kept an accurate checkbook in the past and now it never balances.

*Impaired judgment, such as dressing appropriately. This does not mean the senior is mixing plaids and strips, or purples and reds, but is caught wearing a bathrobe to the shopping mall or putting on several shirts instead of one.

Wednesday, July 9, 2008

The following information is borrowed (with her permission) from Jean Bandos, MSN, RN, GCNS-BC Research Director at "My Health Care Manager." Jean is an experienced Gerontological Clinical Nurse Specialist with a vast expertise in care management of the older adult.

"My Health Care Manager" is a national company that helps seniors and their families manage the complexities of older adult life. They have a website and a free 800 number that you can call to have any of your caregiving questions answered. The number is 1-800-499-8020.

"WHAT'S NORMAL AND WHAT ISN'T?

Forgetfulness and minor memory problems are a normal part of aging. As we age, memory lapses like not remembering a name or taking more time to figure out directions to a new destination are normal. However, when these memory lapses become extreme and continuous, some action needs to be taken.

Unfortunately, there aren’t clear cut signs or determinants that an action is related to serious memory loss or if it’s common for a senior. An indicator that a behavior is normal includes minor occurrences, such as an older adult getting lost driving in a new part of town or having one fender bender. But, when the older adult can’t find his or her way home from the local grocery store or has several “I can’t remember how that happened” dents in their car, that is likely a sign of a major problem that needs to be addressed.

Dementia, or memory decline, is caused by a problem within the brain that makes it hard for a person to remember, learn and communicate. As the dementia progresses the individual may display disruptive behavior and other side effects. It’s estimated that as many as one-third of adults will experience a gradual decline in cognitive function during their lifetime. It’s important to seek medical attention right away if noticing major indications of memory decline."

I hope to be able to share more tips from Jean Bandos in future posts. Stay tuned.

Friday, July 4, 2008

This article is about the best way for caregivers of parents and spouses to use Google and other internet search engines to find quality services for their elderly loved ones with dementia.

No matter which dementia is involved (Alzheimer’s disease, senile dementia, pick’s disease, lewy body dementia, frontal temporal lobe dementia, vascular dementia, Parkinson's disease—to name just a few of the dozens of dementias that we know about), the keywords used in the research will make all the difference.

Of course. a “keyword” is a word or phrase that is entered into the search box of Google, Yahoo, Ask, and other search engine sites to prompt them to report links to relevant websites. The following paragraphs use popular keywords (IN CAPS) that usually generate multiple links to comprehensive sources of major information for Alzheimer’s Disease caregivers and related dementia sufferers.

CARE ASSESSMENT—This phrase will be helpful to caregivers who seek professional guidance about how best to meet their loved ones’ care needs.

ASSISTED LIVING—You are a caregiver to an elderly parent or spouse and you know your loved one can no longer live independently. But how to choose a proper structured and safe assisted living home for him or her? Pundits have said that “if you’ve seen one assisted living home, you’ve seen one assisted living home.” In other words, while there are some common elements among them, they are all different. There’s the medical model, the social work model, the luxury model, the economy model, the nursing model, the NORC (Naturally Occurring Retirement Community), and many variations on these themes. This keyword (i.e. Assisted Living) will get you started on your important search for the right program for your loved one.

CAREGIVER BURNOUT: This phrase describes a common feeling of helplessness and frustration among caregivers dealing with endless demands upon their time, energy, emotions, finances and patience.

CAREGIVER SUPPORT GROUPS: Many caregivers cope with the loneliness and isolation of their situations by joining real or virtual support groups. The internet can help them find an appropriate group.

ELDERCARE: This keyword will help the researcher to identify a variety of resources available to assist with the caregiving of aging parents or spouses with dementia.

SKILLED NURSING—or skilled nursing homes—or skilled nursing care are all keyword phrases that will lead elderly parent caregivers or spouse caregivers to information about how best to access this level of care for the dementia sufferer.

NURSING HOME RATINGS—When that dreaded moment arrives that nursing home placement for a loved one is imminent, this keyword phrase will lead you to sites that provide information to help you choose the best environment for your elderly loved one. Links to several nursing home rating sites are listed on my website: www.dementia-diary.com.

MEDICAID NURSING HOMES—Medicaid is the national program for financing health care to the poor. The cost of elderly care is so high that many patients run through their savings and are nearly destitute by the time nursing home care is needed. Elderly patients needing skilled nursing care who cannot afford a private nursing home may qualify for Medicaid. While not all nursing homes accept patients on Medicaid, many do. Guidance for families in this situation can be found on the internet by using this keyword phrase.

MEDICARE NURSING HOMES—Medicare is part of our Social Security system and provides financing for medical services to most citizens over the age of 65 regardless of their ability to pay. However, not all nursing homes accept payment from Medicare because that government program is quite limited with respect to long term care benefits. These homes fear that when Medicare benefits run out, they’ll have to continue to provide care without receiving compensation for services rendered. Nevertheless, many nursing homes are open to admitting Medicare patients for at least the short term—and some will permit such patients to remain if they become Medicaid eligible. It’s important to obtain this information up front as you go about researching nursing homes for your loved one.

HOSPICE CARE—Most folks are now familiar with this wonderful care concept for dying patients and their families. It was pioneered in England in the 1960’s, promoted by Elizabeth Kubler-Ross’s work on death and dying, and is now widely available throughout the United States. Medicare currently pays for most elderly patients requiring hospice care.

BILL PAYING SERVICES—Sloppy bill paying behavior is one of the first things caregivers notice when they see decline in their elderly parents or significant others. This often leads to a search for a commercial bill paying service. Many banks offer this service too. While not exclusively for dementia patients, these services can make it much easier to assist a loved one with dementia to pay his or her bills and eventually, if necessary, to take it over completely.

Do you know of other important keywords? If so, let me know at bobtell@mac.com

Wednesday, June 25, 2008

Here’s a popular article I wrote that is appearing on eldercare blogs, zines and sites throughout the web. It first appeared on my former website on September 17, 2006. I hope you agree that it is as relevant today as it was then. Feel free to continue a conversation on this theme, caregiver burnout, caregiver support, or on any other related topic:

In 1906, Dr. Alois Alzheimer presented a key paper to the meeting of the South West German Society of Alienists. In it he described the disease syndrome that now bears his name. Today, Alzheimer’s Disease has become the common term most people use whenever they talk about any kind of dementia. In fact, the very term “Alzheimer’s” has become a catchall for any syndrome in which progressive cognitive dysfunction is the major manifestation.

From a caregiver’s point of view, it almost doesn’t matter which dementia is at hand. The perpetual grief and mourning felt by the caregiver will be the same regardless of the specific process affecting his or her loved one.

My special interest is in Multi-Infarct Dementia because that is the one that affected my mother and the one I write about in: “DEMENTIA DIARY: A Care Giver’s Journal.” (Another name for this syndrome is Vascular Dementia.)

I should say that I am not a physician or a professional expert in this disease. I am, by profession, a hospital administrator, so I do feel equipped to at least understand the language of the clinicians. What I know comes from 16 years of watching my mother sink into her opaque world, plus 16 years of discussions with physicians providing her medical care.

Here is the way one physician described Multi-Infarct Dementia to me. It is caused by multiple strokes, some call them mini-strokes. The “victim” of this condition may not be, indeed usually is not, aware that anything out of the ordinary has occurred. Neither are his or her significant others.

Perhaps there is momentary weakness, headache, or dizziness, but nothing major. Over time, however, enough damage is done to the brain that symptoms begin to appear such as: confusion, impaired judgment, aphasia, irritability, depression, mood swings, inertia, significant memory loss, and a host of possible others.

Not all symptoms are experienced by every sufferer, but sooner or later most of them may appear. And the symptoms of Multi-Infarct Dementia are not really all that different from Alzheimer’s or other dementias. I’ve been given to understand that these differences are subtle, hard to tell apart for a layman.

Health care professionals have explained that if one were to line up sufferers of each of the various dementias next to one another you could probably differentiate them—but that’s what it would take.

If you are dealing with a dementia in a loved one, good luck and best wishes in your search for help and understanding.

Sadly, the interest in Alzheimer's and other Dementias is universal. So is caregiver burnout. The good news is that modern medical technology has enabled millions to experience longer life. The bad news is that many of these aging millions live longer but don’t really experience it—at least not in the way you and I do (or as they themselves did when they were younger). Their memories are gone or going and their loved ones are grieving for who they were. But caregiver support is available.

This blog is dedicated to all caregivers of aging parents or other loved one’s whose identities have been lost to this terrible process. To encourage discussion and exploration of this timely topic, I have made myself available to community, library, academic and religious groups primarily in, but not limited to, Michigan and Florida. A complete calendar of my scheduled eldercare talks is available on request. If you are interested in scheduling a presentation, please let me know with a comment on this blog or else contact me at: bobtell@mac.com.

Tuesday, June 17, 2008

These days, almost every senior has experienced denial of Medicare payment for a legitimate health service by an HMO or other insurer—but you don’t have to passively accept the denial. I didn’t. It was time consuming but persistence usually paid off in reversals of these denials.

When my mother was enrolled in one of those so-called comprehensive health plans for seniors, it seemed as though every doctor she saw and every procedure or treatment provided produced an immediate letter of rejection.

As a result, I had a chance to hone my skills at appealing these actions. I believe that the appeals process may deliberately use cumbersome and bureaucratic procedures with intent to discourage appeals. Faced with this hassle, many folks just give up in disgust and pay the bills out of pocket. This is unfortunate.

My take is that you can get many of these rejections reversed with persistence and a little bit of knowledge. As just one example, how many of you know the following Medicare rule?

The HMO/CMP Manual #2116 states that it is the Health Plan's responsibility to ensure that physicians or providers know whether services are covered by Medicare or by the Plan as an additional or supplemental benefit and that they properly use the authorization system. If the Medicare beneficiary receives services under the direction or authorization of a plan physician and the beneficiary has not been informed that he or she is liable for the costs of such services, then the Health Plan must pay for such services."

This rule can be one of the most important arrows in your quiver. In most cases, a physician orders the medical service being denied without specifically informing the patient (or representative payee) that he or she might have to pay for the service. If they don’t tell you, you don’t have to pay!

This is especially true in senior housing settings where patients may not have the cognitive awareness to understand complex Medicare and insurance rules anyway.

Another truism is that organizations such as health insurers must follow their own procedures to prevail. If they fail to do so for any reason it significantly weakens their case. The good news is that they are often victims of their own complexity and, if you watch carefully, you may catch them diverging from their own procedures. Document this and call them on their failures. Examples of successful letters I have used are available on request. Try it! You’ll be pleased at the results.

Tuesday, June 10, 2008

Another wonderful book that I highly recommend is Carol Bradley Bursack’s “Minding Our Elders."

Back when I was the frazzled son of an aging mother with dementia (during the long months prior to her death), I found validation and comfort in Bursack’s exceptional book. Eldercare is often a lonely business and one that places a profound mental and physical burden on the caregiver. Healing begins with the discovery that one is not alone. “Minding Our Elders” provides ample evidence that eldercaregivers have plenty of company these days.

Bursack uses a professional journalist’s interview technique to compile the trials and challenges of over twenty-five caregivers who have poured out their hearts to her.

There is a relaxed intimacy to her writing style that immediately engages the reader. It feels as though each of her subjects has become your own personal friend who is quietly sharing with you the private pain associated with care of their loved one.

Bursack introduces each person with a description of surroundings, clothing, gestures and expression that reveals a sharp eye for detail—the kind of detail that imbues the people and their stories with humanity. Her faithful and insightful reporting of these stories, told in each caregiver’s own words, has created a sensitive and well written book that is must reading for anyone facing the decline of a parent. More information can be found at: http://www.mindingourelders.com

If you do read “Minding Our Elders,” let me know if you agree with my review.

Monday, June 9, 2008

Have you ever asked yourself this question when your loved one with dementia is being obnoxious? I did. Frequently. Then, of course, I felt guilty for having this reaction. Here’s what the social workers told me:

"First of all, it’s a normal question about normal behavior for someone with cognitive decline. Many dementia sufferers have difficult behavior patterns, including such things as overeating without remembering they just ate, asking the same questions repeatedly, physically aggressive actions, removal of clothing in public, loudly insulting people in public places, and... (you can fill in the blanks I am sure with many other behaviors.)

Second of all, it’s not “about me.” It’s about her...or him...or them. It’s a disease process—an illness. Your loved one cannot control the symptoms of this sickness any more than if it were pneumonia, or heart disease, or cancer, or any other dread condition. Things are happening in his or her brain that affect behavior."

Chances are your loved ones would have been embarrassed to death if their earlier, healthy, selves could see them now. It’s up to us as caregivers to recognize that they are not “doing it to us,” and to forgive them—daily if necessary. They just can’t help themselves.

I know it’s hard to do this when Mom tells you your brother (or sister) is more caring, more solicitous, more anything than you when you know that the sibling in question has run the other way as fast as his (her) legs can move (without ever looking back). She doesn’t mean it! And don’t blame your sibling for running. You would too if you could, wouldn’t you? (Not really, but you do think about it, don’t you?)

So recognize the wisdom of the “social worker” advice I’m passing along. If you can get yourself to ignore the behaviors as symptoms of disease and not take them personally (even when they seem to be personal), you’ll be a much happier person and a better caregiver for your loved one with dementia.

Saturday, June 7, 2008

Just when I thought I knew who my audience was, I discovered a group that I hadn’t consciously considered before. Here’s what happened. I was asked to speak about Dementia Diary at a Catholic university. My audience consisted of quite a few Nuns with caregiver responsibilities for Sisters afflicted with various kinds of dementia. Until then, I thought of my readers as mostly children or spouses of loved ones. Since then I've realized that the group is so much broader than that and so is my thinking. Dementia affects ALL categories of human beings...so, of course, members of religious communities, unmarried adults, significant others, residents of group homes, etc., etc., etc., all can have people in cognitive decline and caregivers struggling with their welfare. In retrospect, that should have been obvious—but my learning curve finally caught up with the reality.

Friday, June 6, 2008

Hospice is one of the really humane programs in a health care system that sometimes seems to be more dollar oriented than patient oriented.

As a health care executive, I was active in the early days of the hospice movement. In the late 1970's, I was CEO of a hospital in Kansas City and Chairman of the Planning Committee to establish Kansas City Hospice as a joint project of four area hospitals. It's still going strong and I'm proud of the role I was able to play back then.

Since then, I've had personal experience as a beneficiary of hospice support for family members. My mother-in-law died in the early 1980's in a West Palm Beach, Florida hospice that eased her last days and assisted my wife and her sister to cope.

More recently, my mother received hospice services in her nursing home from Hospice of Michigan. I really appreciate the support HOM provided during her end stage and final passing.

Sometimes dying patients and their families are unaware of the availability of such services. All too often, their physicians need to be educated to refer the terminally ill for hospice care.

If you or a loved one is nearing the journey’s end and the doctor has not mentioned hospice, don’t be bashful. Take charge! Research your local hospice programs and make your own arrangements. You won’t be sorry.

Thursday, June 5, 2008

Let me describe a typical nursing home visit toward the end of Millie's life. It was the end of lunchtime. Mom was asleep in her wheelchair with a half finished plate of pureed stuff—green, brown, stuff—and clutched in her hand upside down was a small carton of the fortified chocolate shakes she likes so much. The contents of the shake was all over her bib and clothing and there were no attendants handy to clean her up. She smiled weakly when she saw me and, I think, recognized me, but her energy level was clearly low.

Anyway, I wheeled her over to her room where my wife was busy exchanging her summer clothes for her winter clothes and parked her against a wall so we could chat (or try to). She was sliding down in her wheelchair and I noticed that no one had bothered to attach the wheelchair footrests (again). I found the footrests in their usual spot under her bed (?), attached them and tried to lift all 140 pounds of her into a more comfortable position. I couldn’t do it myself, so my wife came over to assist and, together, we managed to improve Mom’s posture slightly.

All this time no staff person offered to help, so my wife cleaned Mom’s lunch off her clothing as best she could. Mom was sporting a stylish new haircut, so my wife took out her compact mirror and gave it to Mom so she could see how she looked. She seemed really interested and stared at the mirror for a long time. Great, we thought. She still cared about her appearance. But our pleasure soon evaporated as Mom lifted the compact to her mouth, licked it with her tongue, and tried to eat it. She must have thought it was a cookie.

Another possibility is that vision, hearing, smell and taste are so far gone with her that touch—tactile experience—is all she has left to gather information. Perhaps she wasn’t so much trying to eat the mirror as to identify it—but as I said in another article: who knows?

Suddenly she started holding her throat as though she was in great discomfort. It could have been a swallowing issue, reflux, heartburn, breathing problem...or none of the above. She could not articulate the answer but nodded affirmatively to a suggestion of water. She drank eagerly, and swallowed easily, until she aspirated the water and began to choke. Still no staff member was near enough to observe and to help.

Finally, we tackled an aide who was passing by and learned that Mom’s assigned aide went home early because she had spilled something on her clothes. Staffing levels being what they are, that meant that Mom would be unattended until the next shift. Because we were there and making demands, we got a promise that this aide would add Mom to her already huge caseload and keep an eye on her until shift change.

So the question is: if this was the situation when family members were visiting, what was it like when we weren’t there? If I thought she would get better care in another home, I would have moved her in a heartbeat—but there were no better alternatives available in our area. So what would have been gained by putting her through the trauma of moving? Not much in my judgment.

I know of no happy nursing home experiences. If you have one to report, please share your story on this blog. It would be a real morale boost for the rest of us.